FMS and PCOS (Polycystic Ovarian Syndrome)

Discussion in 'Fibromyalgia Main Forum' started by mms, Feb 15, 2003.

  1. mms

    mms New Member

    How many of you have been diagnosed with PCOS- Polycystic Ovarian Syndrome? It ia a hormonal, endocrine disorder. My daughter has both and I am convinced there is a link...
    Thanks for any input.
  2. pumasees

    pumasees New Member

    I have both FM and PCOS. I have for many years. I also have CFS and other disorders. My doctor has also diagnosed me with Insulin Resistance Syndrome. Most women with this suffer from at least three of the following: CFS/FM, Depression, PCOS, Highblood Pressure, Obesity, and Sleep Apnea. The only one I don't have is High BP. It might be something to check into. I wish your daughter luck and hope this helps you. Debra
  3. SaraW

    SaraW New Member

    I have both as well. I am convinced that there must be a link. I just wish I knew more as I am currently trying to conceive and it is not going well. I am undergoing treatment for Insulin resistance. Any help is welcome.
    Sara
  4. Plantscaper

    Plantscaper New Member

    Like Nink I think I have had this since probably puberty, too..A few years ago, I finally found this Problem in the medical books and realized that it fit me to a tee..I think it caused my hyperinsulinism or insulin resistance and I think it is why I have had fertility problems and so many problems with menstrual cycle..I finally broached this with my gynecologist, which I thought should be able to diagnose this as it seemed to be in her field.. Well, she totally negated the idea without doing anything to diagnose..I had thought about going to a Endocrinologist, however, didn't know whether it would be addressed there, either..I am losing my money and respect for docs, at this point..I think that I had some androgenic aspects as well, nink..before I found out about insulin resistance, I was working out at a health club, and I was really doing a lot of weight training to lose weight and I started developing muscles like a male..there is a connection between insulin resistance and too much male hormone in the body..If I stay on a very strict hyperinsulinism diet, my hormones are more normal for a female and I don't build muscle like that from weight training..and I like to do strength training..it's about the only exercise that does not require endurance, which I NO LONGER possess .. LOL, AMELIA
    ARE ENDOCRINOLOGISTS THE DIAGNOSTIC PHYSICIAN FOR THIS DISORDER? Were you treated for this with medroxyprogesterone?[This Message was Edited on 02/26/2003]
  5. j9miller

    j9miller New Member

    I was dx in October 2002 with PCOS ... dr thinks I have had it for years but until I had "female" problems it went unchecked. I also have FM.

    Janine
  6. mms

    mms New Member

    My daughter is 19 and was diagnosed with PCOS at age 16. She is on metformin, aldactone, and Yasmin (a new birth control pill that is very good for PCOS). Her PCOS is under control but her chronic pain began in October 2001. She has now been diagnosed with FMS. I do know that metformin (glucophage) helps the insulin resistance with PCOS but has been reported to cause low B12 with long term use. This was reported in a journal for diabetes.

    As for PCOS- the best doctors to see are reproductive endocrinologists...I have a wealth of information if you wish to email me at mollys@cox.net.

    I am very convinced there is a PCOS-FMS link. The doctors just haven't connected the dots yet.

    Take care- wish you all the best!
  7. leah9798

    leah9798 Member

    yes you need to see an endo. I'm being tested now for it. Good Luck!!
  8. Pluto

    Pluto New Member

    I hadn't thought about the connection, but as FMS seems to cover most bits of me, maybe they are related! I had a cyst drained but still get pains each month. FMS diagnosed recently. PCOS diagnosed several years ago.
    Pluto
  9. TNhayley

    TNhayley New Member

    So I looked it up (type PCOS in google) and thought it would be good to add this to the thread for anyone else like me who wants to know what PCOS is in a litle more detail. Very interesting ... and one more thing (geez, is the list endless?) to ask my doc about. Since hypoglycemia is so prevalent in us ... might this be at the root of it for many of us? I wonder, is hypoglycemia as prevelant in men as women with this DD? Any comments or interpretations on the folowing would be welcome. Hugs, Hayley

    Polycystic Ovarian Syndrome (PCOS) is also known as: polycystic ovaries; sclerocystic ovarian disease; polycystic ovarian disease (PCOD); Stein-Leventhal Syndrome. PCOS stands for Polycystic Ovarian Syndrome. PCOS is actually a misnomer, because it only refers to one of many symptoms associated with this disorder. It affects between 5 to 10% of all women and is one of the leading causes of infertility.

    WHAT ARE THE SYMPTOMS?

    Symptoms can be mild or severe, and can vary widely from woman to woman. This is part of the reason doctors often miss the diagnosis. Someone with PCOS may have one or all of the following symptoms in varying degrees:

    - irregular periods: abnormal, irregular, heavy or scanty (oligomenorrhea)
    - absent periods (amenorrhea)
    - ovarian cysts
    - hirsutism (excess facial and/or body hair)
    - alopecia (male-pattern hair loss)
    - obesity
    - acne
    - skin tags
    - acanthosis nigricans (brown skin patches, often found on the nape of the neck)
    - high cholesterol levels
    - high blood pressure
    - exhaustion and/or lack of mental alertness
    - decreased sex drive
    - excess "male" hormones, such as androgens, DHEAS, or testosterone
    - infertility
    - decreased breast size
    - enlarged clitoris(rare)
    - enlarged ovaries
    - enlarged uterus

    Note that symptoms can worsen over time or with weight gain.

    I THINK I HAVE PCOS - WHAT NOW?

    Go straight to an endocrinologist. They specialize in glandular disorders; in this case, the gland in question is the pancreas, which is overproducing insulin. Seeing an OB/GYN is only really useful if you are trying to get pregnant and, even then, a reproductive endocrinologist would probably be better informed.

    TESTING FOR PCOS

    There is no *one* truly definitive test yet, but rather a set of tests can be used to diagnose PCOS:

    1. A glucose tolerance test (GTT). Note that for the GTT you should have about 200g of carbs daily for the three to four days leading up to the test -- but of course fasting for 10 to 12 hours right before the test! -- otherwise the results will not be accurate. Also, smoking or exercise for 8 hours before or during the test can affect results.

    2. Cholesterol Levels. Not just total cholesterol, but also triglycerides, HDL cholesterol, LDL cholesterol.

    3. Testosterone, LH, FSH, and androstenedione levels. Some doctors will advocate more or fewer tests, but the ones listed above are the most common. Other tests may include urine 17-ketosteroids, laparoscopy, ovarian biopsy, serum HCG (pregnancy test), and basal fasting insulin.

    In addition, some physicians will also suggest an ultrasound to check for ovarian cysts, which is of course what the syndrome is actually named after. However, some women with PCOS do *not* have ovarian cysts and some women who do not have PCOS do, so an ultrasound alone is not enough for a firm diagnosis.

    WHAT CAUSES PCOS?

    The root of PCOS is an inability to respond properly to insulin, the hormone produced in the pancreas that allows your body's cells to absorb energy from the food you eat. This means your cells don't respond to the normal amount of insulin, so the pancreas pumps out even more. That's what insulin resistance is and it happens when the body turns carbohydrates, both simple and complex, into glucose that surges into the bloodstream. Insulin travels to the muscle cells, telling them to take glucose from the bloodstream and store it in the liver. As insulin levels in the blood increase, glucose levels in the blood decrease. When blood glucose falls below a certain level, the brain, which needs glucose to function, calls out for more by telling you to eat again. If it doesn't get glucose, the result is drowsiness or lack of mental alertness. This glucose shortage is also known as low blood sugar or hypoglycemia. When hypoglycemia strikes, the liver is unable to replenish bloodglucose from its stored supply because eating a carbohydrate-rich meal or drinking a sugary beverage creates an exaggerated insulin response that prevents delivery of the glucose. So, insulin remains in the bloodstream,sending messages to store more body fat and preventing the release of already-stored fat, and glucose remains in the liver instead of going to the brain. In addition, the high levels of insulin stimulate the ovaries to produce large amounts of the male hormone testosterone, which may prevent the ovaries from releasing an egg each month, causing infertility. High testosterone levels in women also cause acne, male-pattern baldness, and excess hair growth. Last but not least, it is the insulin problem that puts us at increased risk for diabetes as well as heart disease.

    WHAT IF I HAVE PCOS?

    If you are currently overweight, the first step is to lose the excess pounds, because many symptoms of PCOS improve or even disappear entirely at normal weight. Since the cause of all the problems is insulin resistance, the key seems to lie in restricting carbohydrates and exercising regularly, for physical activity also helps regulate insulin production. The most popular of the low-carb diets are 'Dr Atkins' New Diet Revolution' by Robert Atkins and 'Protein Power' by Michael and Mary Eades. Another popular approach is the 'Carbohydrate Addicts Diet' by Rachel and Richard Heller. Even at normal weight, it is still critical to moderate carbohydrate intake as well as exercise. This is simply going to have to be a way of life, since PCOS cannot be cured, only held in check. Although many women have reported great success through low-carbing and exercise alone, a growing number of women with PCOS are now being treated with so-called diabetic drugs, such as Metformin (AKA Glucophage). There have been several studies reporting good results in treating PCOS with Metformin. However - and this is very important! - Metformin is only meant to be taken temporarily. The goal is to use Metformin in conjunction with diet and exercise to lose excess weight.

    THE FUTURE

    New discoveries are being made all the time. We certainly know far more about PCOS now than even a few years ago. Also, on the horizon, are new medical treatments, such as INS-1. It is currently only in the testing phases, but looks to be quite promising. In the meantime, there is a lot of support and information out there for you - this is just one of many sites and mailing lists!

    Written by: Claudia Whitworth 2-13-99
  10. j9miller

    j9miller New Member

    I have FM and I was officially dx last Novemebr with PCOS and had to have an endometrial ablation. I still need to get to the endo dr but am so sick of going to drs I keep putting it off.

    Janine
  11. PatPalmer

    PatPalmer New Member

    My daughter has CFS and was diagnosed with PCOS last year, she is now 18, and looking back has always had the problem from the age of 12, - periods had never been regular from day one...
    They did an ultasound scan which showed up the cysts in her ovaries.

    This is a very interesting connection, seems there are more than I would have thought. Good one mms.

    Love Pat.
  12. mms

    mms New Member

    Thanks for the responses. My daughter started topomax about a month and a half ago, increasing 25mg each week
    (for FMS) and her pain seems to be improving.

    For those with PCOS- ar any of you taking glucophage
    (metformin) for either PCOS or diabetes? My daughter takes it for insulin resistance (due to PCOS) and it has been a good drug for her, along with aldactone (spironolactone) and yasmin (birth control pill with anri-androgen properties).

    One area of thought my husband and I want to explore...dose long term metformin use contribute to chronic pain? Just a thought. Most doctors say no but myalgia is listed as an adverse reaction. She has been on it since 1999.

    Thanks so much!
  13. Plantscaper

    Plantscaper New Member

    My PCP is going to do the a C-Peptide test for insulin resistance.. have had all the symptoms of PCOS and insulin resistance for a long time, but was never diagnosed..Had a GTT many years ago, and was diagnosed with Hypoglycemia..

    For those who are on the insulin resistance drugs, are they really effective? I have been on a low-carb diet, but it does not seem to be enough..have upper body and abdominal weight gain..Haven't had the health insurance, lately, to go to a reproductive endocrinologist (did not know this is where it should have been diagnosed, long ago).

    Is the C-Peptide test a screening test for this and is it a sufficient test to rule problem in/out?

    Would really appreciate some good input on this...
    HAVE A GOOD DAY,
    ~~Amelia~~


    [This Message was Edited on 05/18/2003]
  14. Lox

    Lox New Member

    I was diagnosed with PCOS so long ago i can't remember exactly when it was. Was taking Aldactone too, but found it made me so tired and really never did much anyway.

    It wasn't treated, apart from the Aldactone, as i was not trying to get pregnant so I just live with it - the thought of going through more crap with tests etc at the moment is just too hard lol but then again, maybe it might even some other thigs out too.

    cheers

    Lauren :)
    [This Message was Edited on 05/18/2003]
  15. mms

    mms New Member

    I have PCOS and also my daughter does. We were both diagnosed with an insulin/glucose tolerance test. Insulin MUST be drawn at the same time. The test can be a 3 or 5 hour test. The abnormality in processing insulin usually shows up at the 2nd hour.

    Yes, the insulin sensitizers work. My daughter has been on metformin since 1999, A miracle drug for her. She is just turning 20...and FMS showed up about a year and a half ago. We are trying to see if there is a connection.

    Not sure if the C Peptide test will show it but I know I've heard of it.

    Take care!
  16. Plantscaper

    Plantscaper New Member

    Hi mms...

    As I stated above, she has indicated a C-Peptide test, which I have researched a little on and it seems to be a diabetes test..I don't think that I have diabetes, yet..Have had insulin resistance, on a low-carb diet, but is not enough...

    When I had a GTT, the insulin part was not done, but had a really strong hypoglycemic reaction...Do I need to find a endocrinologist and does it have to be a reproductive endo (are they present in most cities)?

    Thanks for any help you can provide and can you point me to the website that has a lot of info on this...

    Thanks so much for your help and assistance,
    HAVE A GREAT DAY!
    ~~Amelia~~
  17. Applyn59

    Applyn59 New Member

    I was diagnosed with PCOS a little over a year ago.
    So many symptoms overlap with FMS symptoms.
    It isn't funny.

    I was diagnosed via a fasting insulin test by my
    np gyn. I was then sent to an endocrinologist.
    If you are not trying to conceive, a regular endo will
    be just fine. I never had the c-peptide test.
    Some also have string of pearls appearance of tiny
    cysts all around the ovaries that show up on diagnostic
    ultrasound. I don't have that feature.
    Search for soulcysters on google and you will find a wonderful site on PCOS.
    Good luck,
    Lynn
  18. Plantscaper

    Plantscaper New Member

    Are you on Metformin or some other med for insulin resistance, and if so, do you feel that it has been effective for that purpose?

    Thanks for any information you can provide, and I will go to the website indicated...

    HAVE A GOOD NIGHT,
    ~~Amelia~~[This Message was Edited on 05/20/2003]
  19. mms

    mms New Member

    Yes, insulin must be drawn at the same time. It requires special handling and some dr. offices are not equipped to do it. I've heard that some doctors are not requiring the whole 3-5 hour test. My daughter's results were skewed at the 1 and 2 hour mark. She had gained 50 lb in just a few months. There is a wealth of info on PCOS...type in polycystic ovarian syndrome...you will get many helpful websites. There is one site that gives a quiz for you to take to see if you might have PCOS. I am very interested in any hormonal connections since may daughter is so young and has both.

    She has greatly benefitted from metformin, which she has been on since 1999. She lost all the weight, is thin again and her body in under control, except for the FMS.

    Take care!
  20. Applyn59

    Applyn59 New Member

    I am currently on glucophage xr. I don't know if it is doing much for me or not to tell you the truth.
    After three months on it my bp was a little lower.
    Haven't had follow up tests yet.
    My endo and I think many do, screened me for
    Cushing's disease at the same time. This was via
    a 24hr urine collection (fun, fun). Many of the symptoms are the same and Cushing's needs to be ruled out.
    I have a hump on the back of my neck upper back area,
    which is a classic sign of Cushings, along with moon
    face. Luckily , I didn't have it - although my dr. almost thought it would be a good thing since it is more fixable (though thru surgery) and I would feel a lot better.
    Not the case though. My fms dr. thought that the glucophage might help the fms because he said fms is greatly influenced by hormones, etc.
    My email address is in my bio. Email me and I can
    send you some good info on it and direct you to sites.
    Lynn